What Happens After You Recover From an Eating Disorder?

Toward the end of my treatment for an eating disorder, my therapist and I talked about how I’d navigate the real world and keep myself healthy once our therapy came to an end. “Healthy” for me meant eating regular meals, not starving myself and not making myself throw up, habits I’d picked up and put down at various points throughout my adult life.

“If you feel yourself slipping, if you eat a meal and have the impulse to purge, take a moment,” she offered. “Instead of throwing up, write in your journal or do a crossword.”

I looked at her, sitting across from me, smiling kindly. Was she serious?

I understood her larger point: Wait for the moment to pass. Feeling full made me panic. Throwing up offered instant relief. In therapy, I learned that if I waited 15 or 20 minutes, both the fullness and the panic would pass. But you don’t tell someone with a black belt in self-destructive behavior to pick up crossword puzzles instead.

If you have an eating disorder, you can get treatment for it: There are evidence-based methods to help patients ditch their destructive habits andget out of imminent medical danger. But once you make enough progress to be considered “recovered,” there’s not much guidance. It’s a significant deficit in eating disorder care that, 10 years later, I still struggle with.

For me, treatment was triage — to change the harmful behaviors I’d been employing for years. In a warped way, these behaviors had become my coping mechanism. When I felt stressed or anxious, or like I’d lost control over my body or other aspects of my life, I used my eating disorder as a tool to help me feel grounded again. In therapy, I learned healthy techniques to use instead, like keeping a food journal or a log of positive things that happened during the day. But they didn’t provide the same instant gratification. I had to give up my tools, but I didn’t get adequate replacements. When I entered the recovery stage, my health felt precarious. I was supposed to be better. But I just felt adrift.

Explainers

I don’t know exactly when my eating disorder began. I remember being excited about a diet I started with my friends when I was in eighth grade. A lot of cottage cheese was purchased. Then came years of studying ballet and a brief career in dance, where I adopted the diet of the older dancers around me: frozen grapes and Diet Coke.

Once I hit my mid- to late 20s, and it became harder to maintain a low weight, my already unhealthy habits became more extreme. From the outside, everything looked GREAT! But it was all a lie.

If I went out to eat with friends, I’d watch the clock, making sure I was home within the hour to throw it all up. Sometimes late at night, I’d research eating disorder treatment centers and take online screening tests, all of which ended with some version of “You need help.” I knew the damage I was doing to my body. Anorexia, for one thing, is associated with an increased risk of heart failure, and vomiting can wear down the esophagus and cause it to rupture. Still, I didn’t think my eating disorder was serious enough to warrant professional help. One day, I told myself.

I finally sought treatment after meeting the man who would become my husband. Something about him shook me into honesty. I didn’t want to have secrets between us, so I told him. Then I told my parents and my sister, then one or two close friends.

Treatment involved weekly meetings with a therapist, which were recommended over a residential program so that I could stick to my regular routine. When it comes to eating disorders, there’s no single, gold-standard treatment method or any recognized “cure.” But there is strong research to support the use of cognitive behavioral therapy, as well as dialectical behavioral therapy. DBT employs many aspects of CBT, while additionally teaching mindfulness and regulation of difficult or painful emotions. CBT was popular at the time, so that’s what I chose.(Today, there’s an updated version called CBT-E, for enhanced.)

I was in a fragile state. I needed a book called Hey Pretty Ballerina, Everything’s Going to Be OK.

With CBT, you don’t get caught up in the “whys” of your condition, like its possible origin. Instead, you focus on developing the strategies necessary to stop the disordered behavior and get to a healthy weight. One attribute of CBT and similar goal-oriented therapies is that they’re finite.

During our first session, my therapist instructed me to buy the book Overcoming Binge Eating, which outlines the CBT program we were following.

“But I don’t binge,” I told my therapist. I wanted to be very clear.

“Right, but it’s for anyone suffering from an eating disorder,” she said. “The information’s for everyone.”

It was a genuinely helpful book that supported the work we were doing. But I was in a fragile state. I needed a book called Hey Pretty Ballerina, Everything’s Going to Be OK.

I covered the book with wrapping paper so no one — not even me — could see what it was called. Then, even though I didn’t really want to, I read it. And I wept. Because I saw myself in the pages. It was all me. I came to understand that a “binge” doesn’t have to involve eating four pizzas; it’s how someone with an eating disorder might feel even if they just eat an apple. And when I saw the steps that were outlined for treatment, I actually felt hope.

Once in a while, early on in treatment, I’d decide to starve myself and notice the calm it brought me. I mostly did it when I had to deal with something especially stressful, like preparing to host Thanksgiving. It felt good to actively make the choice to deprive myself of food. It also helped me see how I used starvation to cope; not eating became a way to impose structure on my life when I felt like I’d lost control of it.

When I started treatment, I was starving myself and routinely purging, and weighed less than 100 pounds. My therapist gave me “homework” assignments that included trying foods I’d previously eliminated from my diet, like bread and pancakes, and noticing what happened after I ate a piece of pizza — or really, what didn’t happen: My world didn’t implode. After a month or two of therapy, I was eating three small meals a day and rarely throwing up.

I’ve relapsed many times since “graduating” from treatment 10 years ago, but I’ve never told anyone.

My therapist also weighed me weekly. As the number on the scale passed 110 and then 120, we worked together to unpack the panic I felt. These weigh-ins were partially designed to help me separate my weight from my sense of worth — to make that number just another physiological metric, like a blood pressure reading. My therapist advised me to think of food as medicine. I was supposed to eat something small even if I wasn’t hungry, which I never was because years of extreme dieting and purging had thrown my body’s hunger-regulating mechanisms out of whack.

In all, therapy lasted four or five months. By the end of it, I was excited to be done but nervous to be out in the world, and clinging to my wrapping paper-covered copy of Overcoming Binge Eating. Relapse rates for eating disorders hover around 40 percent, according to some studies — a stat that only accounts for the relapses patients report to professionals. Based on my own experience, I imagine the rate is much higher. I’ve relapsed many times since “graduating” from treatment 10 years ago, but I’ve never told anyone.

An estimated 30 million people in the U.S. suffer from eating disorders, which have the highest mortality rate of any mental illness. According to the National Eating Disorder Association, “eating disorder researchers have yet to develop a set of criteria to accurately define what factors are necessary to maintain recovery.” (Funding for eating disorder treatment is scant. Last year, the National Institutes of Health spent $31 million on eating disorder research about the same amount they spent on back pain, which kills no one. Complementary and alternative medicine research, by comparison, received $448 million in federal funds.)

Recovery from eating disorders is set against the backdrop of a culture that prizes thinness and fitness. Remembering what I learned in treatment, I stop when I catch myself creating made-up food rules, like “no carbs this week.” I also constantly second-guess myself: If I decide to cut out carbs, is that my eating disorder rearing its head? Or is it OK to give up at white bread because most of it is processed crap?

I looked back at him with condescending sympathy — didn’t he understand Science?

With so many voices inside and outside my head, it can feel impossible to know which ones I should listen to.

Emerging programs like The Body Positive give me hope. Its 5 Competencies, a series of skills to build and hone, focus on helping people examine and quiet their inner critics, develop deep self-care practices, expand their definitions of beauty, and create supportive in-person and online communities. The Body Positive also holds workshops, both virtually and in person across the country, and trains educators and treatment providers. Much of the organization’s work is rooted in the Health at Every Size paradigm, which focuses on body acceptance, self-care, and eating for health and well-being as opposed to dieting. The goal is to “disentangle the value individuals hold toward themselves as people and their adherence to social pressures to fit an ideal aesthetic,” and some studies have found the approach leads to improvements in both physical and psychological well-being.

Community may be the crucial element that so many of us are missing after treatment ends.

Recently, I read a Washington Post article about “The 10-Day Detox Diet.” The reporter who tried it said he lost weight and saw his cholesterol drop. That day, I ordered the book and informed my husband that we were going to do the diet ourselves. I was excited. He looked concerned. “What’s going to happen in 10 days?” he asked me.

I looked back at him with condescending sympathy — didn’t he understand Science? “It’s a de-tox,” I explained slowly, as if to a child. “It recalibrates the body’s insulin … ”

I stopped. What was I saying? I was parroting the back cover of the book! My husband smiled. I returned the book. (For the record, plenty of other reporters did the same diet and didn’t lose a pound, but did become cranky and miserable.)

Today, I weigh a little more than I’d like to, but I exercise regularly, cook at home most nights and maintain a nutritious, vegan diet. I also still scour photos of myself for flaws and feel guilty if I overeat. If a friend uses the word “keto” too many times in a sentence, I ask her to stop, please. But I find that most of the people I surround myself with these days aren’t looking to lose weight. They’re looking to live.

When I do something I enjoy — spending time with family and friends, yoga, reading — the critical voice goes quiet, and I truly feel at peace. I suppose these are some of my new tools. I’m making this up as I go.

Cole Kazdin is a writer and Emmy-winning television journalist living in Los Angeles. She is a regular contributor to Vice, has written for the New York Times and Refinery29 and has been featured on NPR as part of the Moth Radio Hour.

Thank you for writing this. I am also survivor/in recovery/whatever we are supposed to call ourselves. I talk a lot about life post rehab/therapy and how we just get sent out into the world. It’s not enough. But building that awareness is an important part of creating what we need. Thank you .

Read this next

For people with irritable bowel syndrome, it’s common to hear that symptoms such as cramping, alternating diarrhea and constipation, and bloating are “all in their head.” In the case of IBS, there’s actually some truth to this.

It’s not that their symptoms don’t exist. IBS is a very real disorder, and managing its physical toll often becomes an all-consuming effort. The litany of concerns that accompany so many activities — always scouting the closest bathroom, making sure you can reach it in time, farting in public — keeps many people with IBS from having a social life.

Yet according to some experts, IBS is not solely about what’s going on in the digestive system; rather, the brain exacerbates the condition. “IBS is a disorder of brain-gut dysregulation,” explains GI psychologist Sarah Kinsinger, who is also co-chair of the psychogastroenterology section of the Rome Foundation. Accordingly, addressing the “brain” side of IBS through cognitive behavioral therapy with a trained psychologist may help decrease both the anxiety that’s often associated with the disorder and its physical symptoms.

“CBT really should be the first-line treatment for people with IBS. It’s the treatment with by far the most empirical support, and when done well, it can be curative,” says Melissa Hunt, associate director of clinical training in the psychology department at the University of Pennsylvania.

In a series of trialspublished last year, researchers in the UK compared the standard treatment for IBS (typically diet and lifestyle modifications and/or medication) with eight sessions of CBT delivered over the phone or online. Before and after the trials, participants answered questionnaires designed to measure their anxiety, depression and ability to cope with their illness. Two years after the trials, 71 percent of the phone-CBT group and 63 percent of the online-CBT group reported clinically significant changes in their IBS symptoms. Meanwhile, less than half of the standard-treatment group reported such an improvement. Those who did CBT also exhibited lower levels of anxiety and depression and higher coping ability than other participants.

In an earlier meta-analysis (a study of studies), published in 2018 in the Journal of Gastrointestinal and Liver Diseases, a different team of researchers also found that CBT appeared to reduce both psychosocial distress and the severity of IBS symptoms, with a greater effect on the physical symptoms than on the mental ones.

Explainers

The brain-gut connection

How this happens is not completely clear at this point, but it’s believed to have something to do with how the gut and brain communicate.

“IBS is thought to be a disorder of centralized pain processing,” Hunt explains. “There is miscommunication between the pain centers in the brain and the nerves in the gut. In people with IBS, pain signaling gets inappropriately amplified.” Discomfort that wouldn’t even register in the majority of people feels like being stabbed in the gut to a person with IBS. “The best way to address that is to find ways to help reduce pain signaling, and that’s with a psychologist,” Hunt says.

CBT for IBS entails learning relaxation techniques, such as diaphragmatic breathing and progressive muscle relaxation, which help reduce the “volume” of the pain signals by activating the parasympathetic nervous system, i.e., the body’s “rest and digest” response. “This can also lead to increased blood flow and oxygen to the digestive system, which helps the GI tract to function in a more rhythmic way,” says Kinsinger, who is also an associate professor at Chicago’s Loyola University Medical Center.

CBT also involves thought restructuring. IBS can cause a cycle of worry: Worrying about symptoms leads to being hyperfocused on the slightest hint of any symptom, which increases anxiety, which aggravates symptoms. People with IBS also often catastrophize, meaning they assume the worst will happen (“If I have an accident at work, I’ll get fired and never get another job”), develop social anxiety and become withdrawn. CBT addresses these issues by shifting attention away from IBS symptoms and using exposure therapy to help people gradually engage in more activities outside their homes.

Additionally, using CBT, people with IBS learn to identify and change dysfunctional ways of thinking. For example, consider someone with school-aged children who asks their spouse to attend all school functions because they’re afraid of farting in a room with other parents, which would inevitably cause humiliation and might even make people think they’re disgusting A therapist might ask them how often they notice bodily noises from other people to help them realize that we’re a lot more cognizant of our own bodily functions than other people are. “In other words, we identify the catastrophic beliefs and then search for evidence supporting them or not,” Hunt says.

CBT is a skills-based, goal-oriented approach to treating mental disorders that emerged in the mid-20th century. All CBT programs share the same underlying goal of helping patients identify and modify negative or unhelpful thought patterns and behaviors. “It teaches patients techniques that they can then implement on their own.” says Kinsinger. “It can be done pretty efficiently, depending how motivated and receptive one is to learning these skills.” But over time, customized versions of CBT have been developed for specific conditions including insomnia, schizophrenia and IBS. Different versions of CBT use different techniques, such as role-playing, exposure therapy and relaxation exercises, and vary in length. On average, CBT for IBS lasts between 4 and 10 sessions in total.

Jeffrey Lackner, professor and chief of the division of behavioral medicine at the University at Buffalo, SUNY, says their program is structured like a course: “You learn a specific skill to manage your GI symptoms, process information differently or respond to stress in a less extreme way. Then you practice that skill in session before using it in the real world.” Often therapists also give patients homework to fine-tune the skills they learn. They come out of CBT with a toolbox of techniques to manage the day-to-day burden of IBS.

Some people with IBS do CBT on their own, using self-help books, online materials or apps without ever seeing a therapist. “Not many psychologists are trained to treat GI disorders specifically, so physicians don’t often have anyone to refer patients to,” Kinsinger says. The Rome Foundation trains psychologists and maintains a directory of gastrointestinal psychologists, but if someone can’t find a provider in their area, Hunt and Kinsinger recommend looking for a psychologist who’s trained in CBT and has experience treating chronic pain, panic disorders or anxiety.

Reducing sensations vs. reducing sensitivity

Not everyone is fully on board with CBT for IBS. One 2018 review study found “insufficient evidence to demonstrate the effectiveness of online CBT to manage mental and physical outcomes in gastrointestinal diseases” including IBS. A different 2018 review concluded that although psychological treatments for IBS appear to help in clinical trials, it’s unclear if they work in other settings and which treatments — such as CBT, mindfulness-based stress reduction and guided affective imagery — are most effective.

IBS is a complex problem, and some doctors prefer to integrate CBT with other treatments. But “by the time we see them,” Lackner says, “many of our patients have found that the medical treatments have not provided adequate symptom relief.”

Some IBS patients also find thetraditional approaches too hard to stick with. The most commonly prescribed treatment is a “low-FODMAP” diet, which requires giving up all dairy and legumes, plus many grains, fruits and vegetables. “Some trials show that even if the diet reduces or eliminates GI symptoms, it doesn’t improve quality of life because it’s crazy restrictive,” Lackner points out.

“With IBS, the nerve endings in the gut have become hypersensitized, and the brain magnifies those signals in the gut,” Hunt says. “The low-FODMAP diet tries to reduce the sensations, whereas CBT reduces the hypersensitivity. When you turn down the volume on the sensations, then you can eat whatever you want.”

Whether CBT helps with this brain-gut dysregulation, addresses distorted thinking and anxiety, or increases confidence in a person’s ability to manage gastrointestinal symptoms — or all of the above — it’s helped people with IBS resume parts of their life they’d put on hold.

Brittany Risher is a writer, editor and digital strategist specializing in health and lifestyle content. She's written for publications including Men's Health, Women's Health, Self and Yoga Journal.

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